Sunday, June 28, 2009

Gearing up for phase two

This past week of healing from the surgery has been good - have needed the pain and muscle relaxer medications only once per day, if that (I'm still sore and get tinges of sharp pain in some spots, numbness and tingling in others but compared with the first week it's a huge difference). I am still not cleared to pick up Cooper or to drive so I'm incredibly grateful that my mom, Janet, is here to help out. She's amazing and Cooper adores her. She's able to be here because of an amazing program at her employer where employees can donate unused vacation time (that they may otherwise "lose" if not taken by a certain date) to a bank of hours that employees in need can apply to receive for emergency situations. When my mom's boss heard about my diagnosis and that my mom needed/wanted to come out here to help me through this, he immediately submitted a request to get her a bunch of paid time off since he knew she'd exhausted her earned vacation time for the current year. It's an awesome program for which she and I are both very grateful. Anyway, I have one drain remaining on the side where I had numerous lymph nodes removed, but I feel fairly confident that I can have it removed Monday if we make the trek down to UCLA - and I think we will do that since the incision where the drain comes out is really bothering me - no sense in waiting til my Wednesday appointment down there if it's ready to come out. I also would like to have it be gone when I go in Tuesday morning to have a port-a-cath installed in my chest (another surgical procedure) - I'm sure the radiologist placing it would want it out before the port placement too. Anyway, it's something I'm NOT really looking forward to but has to be done. I just don't like the idea of having some hard plastic thing under my skin which can be seen and felt 24/7. I realize that the functionality of it will be of great benefit to me in that my chemo treatments will be easily administered without destroying the veins in the one arm I can be injected into, particularly since I'll be undergoing 8 cycles of chemo. It can also be used for blood draws which will occur before every treatment plus sometimes in between treatments. Still, the idea of this thing creeps me out. I have to ask the plastic surgeon or his staff tomorrow whether it's even OK to have it installed in my chest since I have the booby tissue expanders in. I think the other location option is in my arm - I'm not sure which would be worse to be honest. Besides getting the drain out, I have two other phase 2 tasks to accomplish Monday - call the oncologist to schedule my first treatment, and attend a support group. I am definitely planning to make that call. The support group I'm not totally sure about quite yet. Here's the thing - the group is for people that are "in treatment". It's not focused on a particular type of cancer, or those in a particular stage of illness, and thus I could find myself surrounded by reminders of what my disease could turn into rather than focusing on what it is now and the hope that it won't go further. I know there's value in connecting with others that have/had cancer - that's why I signed up with the organization in order to participate in their groups and services - but I think I am going to look for a breast cancer specific group (this organization doesn't offer one right now) that I can attend instead so that there is at least that aspect of commonality instead of walking into a group of all types, all stages, all everything. I just really need to channel my mental energy into positive, hopeful and determined states of thinking and that is challenging enough without being confronted with what I imagine I might find if I go to this group. There, I made up my mind. haha. Instead of going to that group I will look for a different one. I also need to look for a different therapist - the one I went to on Thursday was....well, let's just say she's not for me. I'm fairly savvy in the area of individual therapy and I know what works for me and what doesn't so I need to make some calls to see who else is nearby that might be a better fit. I haven't been getting the amount of sleep needed for a healthy individual, let alone a person like myself battling cancer and in need of a boost in immunity, so I'm taking steps to address that problem. We resumed Ferber training with Cooper this weekend and I'm thrilled that it's been quite successful and not at all painful as our last attempt was. I actually managed to eek out 10 hours of sleep last night - broken into 3 different "sections" with just minimal interruption time and that was amazing - that's the most sleep I've had in one 24 hour period in over a year! I had to help myself a bit by taking some diphenhydramine but it worked which is great because I really don't want to take prescription sleep pills since I do need to be responsive if Cooper does wake up. Anyway, I think the sleep issue is finally being worked out now that we've got Cooper doing much better (just 1-2 wakings per night compared with being up every 2 hours all night long before). That's good news :) Speaking of's time to do just that. Good night!


  1. Good morning cutie! I thought about a support group, but then decided that it was just not right for me. Though I have heard it can be such an uplifting experience, it just didn't sit right with me, at least for now. I wonder if in the back of my mind, I am still denying the cancer and going to a support group would only reinforce the reality. Agree with you on the pains, definitely sucks! You would think good days would just continue instead of the ups and downs! Found a great on-line support group tht you might be interested in
    they are a wealth of support, tips and information. My on-line name is "I-AM-WOMAN-HEAR-ME-ROAR :)

  2. Hi, Julie,

    Laurie (Amanda's Mom) here. You may know that I am a survivor, too, of 10 years now! I just wanted to weigh in on the support group issue. I joined a group shortly after my diagnosis, and before surgery (I had a left mastectomy and simultaneous tram flap reconstruction, followed by CMF chemo). It was a breast cancer group and I was very lucky in that it was at my local library. I found it VERY helpful early on in the process, to hear how other women had coped and to get feedback on doctors, and help on just making my way through it. On occasion, someone who had non-breast cancer would come to a meeting and, perhaps selfishly, I found that distracting and not helpful because the focus would shift to that, so I do think if you can find a dedicated group, that might be better for you. I found that over time I stopped attending regularly and then stopped entirely about the time my 6 months of chemo ended. I think this was mostly because I decided that my cancer would be part of my history, not a thing that defined my present or my future. Some of the gals had been in the group for literally years and their cancers were still front and center for them; did not want it to be this way for me.

    As to therapy, I found it really helped, but I had been to that therapist previously during another difficult time in my life so I knew she could help me again. If you can find the right one, go for it. Laurie

  3. hey julie, i think that if you talk to woman who have aready been threw it and doing great is an awesome idea, my good friend becky went threw the process and like you had a great deal of support behind her but the woman who had been threw it helped her the most, kept her spirits up and all around gave her things no one eles could,

    as for the port, and the drains and all the yucky stuff that goes along with the treatments just remember when all is said and done, you will look marvelous darling:) love ya ...missy

  4. Hi Julie - I applaud your decision to do what you feel is right, especially in the support group and therapy area. The right support group and therapist can work wonders, but it also goes the other way! And I think it's also a great idea to be in a group with a specific breast cancer focus. This is the time to get what you want!